After I came home from hospital, from April 15th onward, I was behaving normal but I did not feel too good because of lot of nausea, throwing up and less desire to eat. I knew this was happening because of Vincristine. This was not a good week for me at all. I went to the hospital for my blood work on Thursday, April 18th, to get an idea about my counts to see when the 5th phase can be started. Even the counts were very low. My ANC was only 160 and my Hb was 8.6. No wonder I was feeling so tired and cold all the time. They told me to come back on Monday just in case a miracle happens and my ANC count will go up more than 700. I had to be very careful again because of risk of infections. Also the last few weeks affected two of my grades which did make me little upset but I knew that I will be able to do better when I feel better.
The best thing about this week was the visit to my cousin’s house. Just to tell you how crazy it can get at times….. as we were leaving from home to drive to my cousin’s house on April 21st, I just had the craving for Pizza and I just wanted to eat that only. When we found one pizza shop closed then we realized that it was Eater Sunday. I was getting cranky by the minute because I just wanted to eat Pizza and it was driving my mom crazy because my dad drove around to find any pizza place open. No Luck and that made me so upset. I finally agreed to eat at Dunkin Donuts. We finally reached at my cousin’s house an hour late. My mood got so much better because I had lot of fun running after my little cousin and playing outside in the sunny weather some cricket with my brother and cousin. That ended the week well!
What a scary week this was both for me and my family! You wound not even believe what I went through. So Monday April 8th, started off with my hospital visit and the chemo medicines which I am used to now so I can deal with it fine.
On Tuesday, April 9th, in the late afternoon, I was attending my class and then suddenly I could not feel my right arm, then I could not move it and it was hanging by my side. I started to cry and screamed for my daddy because it was so scary. He came running upstairs to see what was going on. Then after couple of minutes, my sensations started to come back and I could slowly move my arm but the grip was weak. My grandparents got worried too. I felt a little numb on right side of my mouth and tongue too but then it resolved on its own. My dad called the hospital who asked us to come to the emergency room. As we were getting ready to go to the hospital, my dad called my mom on the phone at work about what happened. I could hear her getting worried and mentioning something like transient stroke like symptom. By the time I went to the hospital, I was all good. My arms and legs were functioning fully, no problem with my mouth. The doctor came and did the neurological exam to see if everything was okay. The doctor also mentioned the same thing that these were transient symptoms which occurred due to the methotrexate toxicity. I was all good and was discharged from the hospital.
I was doing fine at home until Friday, April 12th, when I started to have another of my weird days. I was in my room attending my class and then suddenly I had this urge to move…move fast or else something is going to happen. I came running down the steps and could not control myself as I was running around aimlessly and jumping around. My dad had to hold me to calm me down. I told him that I was hungry and by the time I ate, I was calm. This happened again in the night but that time, I had already eaten food and the episode only lasted for few minutes. My mom called the hospital and spoke with the doctor who said to monitor me until the next day to see if this is happening repeatedly then I will have to go to the hospital again. Next morning Saturday April 13th, I was playing fine and suddenly it happened again. I cannot describe what was happening to me at that moment. I had lot of involuntary movements in my arms and legs; I could not walk in straight line. My mom tried to do the finger to nose eye hand coordination test which I could not do. My dad said that I was behaving like a little child and could not catch or throw the ball normally. My parents took me to the ER for check up where the doctor said that it may be due to the toxicity of the appetite stimulant Periactin. I had one episode at the hospital too which doctor was able to see. I was finally admitted in the hospital for observation and IV fluids were started.
Next morning April 14th, I was still in the hospital in the morning without any new episode and feeling much normal. Doctor came by to say that since I did not have any more of those episodes, I was okay to go home. I was so happy to hear that because it is sooo boring in the hospital. I also got the final dose of my chemo medicine Vincristine and that was the end of the 4th phase. Before I left the hospital, I got to share my journey with this boy who was recently diagnosed. He was a year older than me and I told him that it is going to be fine once you get used to it.
I finally came home on Sunday evening and could not be happier!
This week started with going to the hospital on Monday April 1st, morning and getting my chemo in the hospital first and then for next 4 days at home with the home nurse. My counts were low but still not bad. My hemoglobin was 10.1 still but my ANC went down to 640. I was feeling a little nauseous in the hospital after the chemo so they gave me Zofran. It only helped a little so I got Ativan too to help me get rid of the feeling. When I reached home, I felt tired and not so good. My body felt exhausted and warm.
I was sleeping a lot and could not attend my classes very well. I actually started to run a low grade fever for couple of days with the headache all the time. It was driving me crazy. Everyone at home was just trying to help me because I was very sad and in pain. My mom tied her scarf around my head and that felt good for some time but the headache came back. I was not eating well also which makes my parents so worried. My mom called the doctor who said that other than taking my temp every hour or couple of hours to see if it goes any higher than 100.5, there is not much they can do. I did not want to go to the ER so we just monitored the temp at home because I did not have the cough or stomach ache or throwing up. When my nurse came to the house for my medicine, she told me to drink a lot of water. I tried but nothing tasted good. Finally I went back to the hospital on Friday April 5th to see what is going on. After they checked my counts, the doctor said that the low grade fever is the side effect of my chemo medicine. I was allowed to take Motrin every 6 hours for headache since my platelet count was good.
I slowly started to feel better with taking Motrin within next 2 days. I think Sunday was my best day because I woke up fresh, ate better and was able to play with my brother. I did lose 2 lbs this week and did not do too well with my school. Even though I was attending the school through VGo, but I was not able to fully pay attention to what was going on because of headache. But I knew that I would be able to catch up with the help of my wonderful teachers!
Tuesday, March 26th, was a very big day for me. You must be wondering what happened. Well, I received the Proclamation for courage, spirit and inspiring attitude in the face of my battle with Leukemia from the Mayor and the Township committee of Hillsborough, NJ. Not only that, my Hillsborough High School Ice hockey team also received the Proclamation for showing the support and dedicating the first game and the season to me for good cause. I am an honorary member of the high school ice hockey team and was presented with the No. 2 Jersey from the team. They also gave me the pucks signed by all the players of the team.
I want to express my gratitude towards the Mayor, the committee members and the Hillsborough High School Ice Hockey Coach and the team…
I am sooo thankful to the hockey player who thought about me so deeply and first brought this to high school hockey coach’s attention. The Hillsborough High School Hockey team Coach and the team has been so generous in showing their support and
love towards me that I feel very motivated and happy. The Ice Hockey team also showed me that not only they are physically strong to play the tough game of ice hockey but also they have very big hearts and they care for someone that they did not even know. I want to express my gratitude towards the Mayor, the committee members and the Hillsborough High School Ice Hockey Coach and the team for all the love and support that they have shown me and promise them that I will continue to fight this battle with positive attitude because I AM STRONGER THAN CANCER.
I also met the Police Officers along with Officer Freddy from K9 unit that came to visit me on Halloween. It was awesome to see that they all remembered me and even invited me to stop by at the police headquarters to get a tour. Once I get my counts high, I certainly plan to go there.
Rest of the week was quiet. My home nurse came 4 times this week to give me the chemo medication through my port and finally the needle from my port was taken out by the nurse on Thursday. I was able to enjoy the good weather on Saturday, March 30th. I played with my brother and my friend for little while outside. But let me tell you, it did tire me out. I definitely need to work on my endurance. I think it was an excellent week with no problems and I was all set for the next week to start with the same routine.
Monday, March 18th morning, I was all prepared with food and overnight bag to go to the hospital and start my 2nd month of the 4th phase. When I got the results from my blood work, I was surprised to see that my ANC was still in 200s which meant I could not start the chemo. It was very frustrating because I was fasting overnight for the spinal tap. The thing that made me happy was that my weight was 63.5lbs even though I had not eaten since last night. On my way back, I had the craving for hot dog and my dad and I tried few places in the way but finally I got it at Quick Check. Man! That felt so good. On the way back home, I was thinking how I can eat better since I will not be getting any chemo medicine this week.
Well I had a busy week with home instructions from my Spanish teacher twice in the week, my social studies teacher and I even started my violin lessons. I lost most of my hair this week but manage to comb the few that are left…haha!! I had the visit from my friend and his dad who is also the hockey coach. They brought me a present for me from the team, a personalized water bottle with the team logo, my name and number. That was awesome!! I had a great time with my friend playing knee hockey. He has grown so much taller than me!! I told my mom that there are also advantages in being small….first you get to sit in the front row seat most of the time and also you can dodge the big guys from checking in hockey….LOL!!
On Saturday, March 23rd, I had an opportunity to go to Devils Hockey game against the Coyotes in Devils arena. Thanks to my Hockey coach who is also my friend’s dad, I was able to get up close to fist pump the Devils players as they were walking out to the ice rink. That was soooo cool !! Thank you so much Coach! I thoroughly enjoyed the game and stayed put on my seat till the end of the game as it was a very intense game which went all the way to shootout. Finally Devils WON!! It was worth the drive and sitting on the hard seats for around 2-3 hours.
Sunday was the lazy day and we spent talking about my brother’s dance competition which I missed and our experience at the hockey game. I got really pumped up after watching the actual game in real life and feel more motivated to go back to ice as soon as I am done with my intense phases oh chemo though the port.
What a crazy week this was ! On Monday, March 11th, when I went for my blood counts, I knew they were going to be low and there it was only 210 ANC but my hemoglobin was still good 12.1. Thank God, I was not supposed to get any chemo this week. I told the nurse about my pain and she said that it may even get worse for few days before getting better but she was okay with one dose of Mortrin because my platelet counts were fine. I came home very tired and restless. Later in the afternoon, the pain in my back and the hips suddenly got so bad that I could not walk, sit or stand. I was screaming and crying, making everyone worried. My grandpa tried to help me by massaging but nothing was making it better. At last, my mom took my temperature first and then gave me the Mortrin which slowly started to work. By the end of the day, I was a different person and this continued for the days to come. I did not know that one dose of Motrin has such an amazing effect.
So the other interesting thing that happened this week was related to my hair. I was sitting at my desk attending the school and I just felt an itch in the back of my head so I scratched. You would not believe what happened after that. I got a big bunch of my hair in my hand. I could not believe it and touched the back of my head again…there it was a big bunch of hair again. So I knew it is really happening what the doctor had said that I am going to lose all my hair this month. In the evening I showed my mom the garbage bin in my room with the hair. My mom was shocked and started to get emotional. I said to my mom, “it’s okay mummy. The stuff happens and at least I will get good hair after all this is over.” My mom said that she was amazed to see that nothing bothers me and how strong I am. From that day onwards, I have been losing my hair crazily and they are everywhere, in my bed, on the blankets, in my hat, on the back of my shirts. So crazy! My dad and I have been joking around that I am going to go bald before him so I am going to look older than him soon…he should be listening to me now…LOL!!!
Even though I was not enjoying my look now but I was certainly having good time with the food. Since I did not have the chemo this week, I was able to eat very well and enjoyed every bite. I got to go out to eat once with my family and spend time in my backyard with the nice weather in the late afternoon when direct sunlight was not there as I need to stay away from that. This is what I really miss….going
After having such a good week, I was all ready for this week because I knew that I was going to get the steroids again. On Monday, March 4th, my blood counts went down and my ANC was 1130, Hemoglobin 11.8 which was not that bad. I actually handled everything on my own that day as daddy got an important call so he was sitting outside. I knew all my meds that I took in the morning and reported them to the nurse; got my port accessed and later my nurse took me for the chemo.
I would say that it was a rough week for me. The best part of the week was that I started with my home instructions for Spanish. My home instructor was super nice! Thanks to her, I think I did well in my Spanish Quiz. Can’t wait to get the results. After first few days, I started with my back and belly pain. It was so hard to eat anything even though I had the urge to eat because my belly was so bloated that it felt like it was going to burst open. I know I made my dad go crazy as I would I ask him bring something from outside and then by the time he came I just could not eat anything. I would just lay down all the time especially in the evening time because my body felt so heavy and sore.
On Sunday March 10th, I was feeling really down with lot of pain in my lower back and the hip region. I was also sad that my grandma was going back to India. She took such good care of me and helped me a lot with feeding me with lot of patience. I will miss her a lot! But at least my other grandparents are here now with me to help me for next few months. Later that day, my pain got so bad in the back and the hips that I could not even sit or lay down. It was the first time, I just could not distract myself and stop my restlessness and complaining about my pain. My mom had to call the hospital to speak with the doctor to find out if I could take pain medication. Thank god I was able to walk and move around otherwise I would have to go the emergency room. The doctor was okay for me to take the pain meds as long I did not have the fever. Oh! What a relief! It felt so much better after taking Tylenol and finally I was able to sleep through the night.